ALK+ Xalkori for 4 months, CT Scan results, 2/3 tumors shrank but 1 grew - 1245590

shinbo
Posts:20

Hello everyone,

I'm posting an update as well as seeking some guidance for next steps to take. I've written extensively about my mother's situation here and now 2 months after the last scan which showed everything was stable with no growth or shrinkage, she now has shrinkage on her adrenal met and shrinkage on one of her lung nodules but progression on her other lung nodule. Is this normal? Adrenal went down in size roughly 30% the other nodule roughly 40% and the third nodule grew roughly 30% to 2.4cm now.

Her oncologist said that in addition to those two shrunken nodules that the cancerous activity in her lymph nodes have also fallen. If this continues the case I am wondering what would be the next possible steps.

Her oncologist suggest to wait another month to see if that nodule continues to grow and then possibly radiate that specific nodule if everything else is stable or move to a clinical trial, he mentioned LDK 378 and another one called chugai(?) that opened up that I'm not familiar with.

My main question is that, since the one nodule definitely increased from the last scan two months ago, would it be worth it to wait another month before acting on it? I would feel better being more proactive if maybe getting a cyberknife treatment to the area. Knowing that tumor is growing and my mother's increasing coughing is weighing heavily on me.

-Dan

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Reply # - July 20, 2012, 10:08 PM

Dr West
Posts: 4735

Dan,

I'm sorry about the disappointing aspects of her response. You can definitely see a mixed response of some shrinkage and one or a few other areas of progression. This isn't really rare at all.

Unless the cough is clearly directly related to the growth of the nodule, there really isn't going to be any benefit to immediately radiating the one growing lesion right now (in fact, radiation could lead to a worse cough and sometimes shortness of breath from radiation-induced inflammation). That concept of radiating a single growing lesion makes sense if we can have some confidence that this progression is truly isolated over a prolonged period of time, but that situation becomes evident only with longer follow-up. There is no reason to expect that radiation would be a less appropriate treatment after some follow-up (and really, one month is VERY short follow-up), but there is reason to think that radiating now only to find that there are other areas of progression in a month or two would make radiating now a pointless strategy.

-Dr. West

Reply # - August 6, 2012, 06:36 PM

shinbo
Posts: 20

Thank you as always Dr. West. As we wait for her next scan in a couple of weeks it just seems like every little thing gets amplified and gets stuck in my head as some sort of symptom.

She said that her legs feels tired and fatigued and I'm worried if it's her bones. Dr. West would a CT scan adequately show if there is progression in the bones? It seems that all my mother have been getting is CTs and the occasional bone MRI.

-Dan

Reply # - August 6, 2012, 07:57 PM

Dr West
Posts: 4735

A bone MRI of the relevant area should give a reliable answer, but a chest CT covers a limited area and won't pick up bone lesions outside of the chest and upper abdomen. An alternative that casts a wider net is a bone scan or PET/CT, but those aren't standard tests indicated for regular follow-up of someone with lung cancer (though very reasonable in people with bone pain to direct a search for bone lesions.

-Dr. West

Reply # - August 17, 2012, 07:20 PM

shinbo
Posts: 20

Thank you for that information Dr. West,

We just got back from the oncologist's office and it looks like cyberknifing that spot doesn't seem to be a recommended option anymore.

Her scan results showed that the previous nodule increased in size again, but now one of the nodules that previously shrank also increased in size. Resistance is suspected and he recommends going to a 2nd generation drug trial, specifically Chugai CH5424802.

He wasn't being very clear as to why he preferred the Chugai over the LDK378 but he mentioned something about the ASCO conference bringing significant data and he thinks it would be better for my mother's case, I've tried searching online for Chugai related information, but it doesn't seem to be as extensive as the other trials.

Any insights in regards to which trial to enroll in? Also considering the AP26113 trial at MGH with Dr. Alice Shaw

-Daniel

Reply # - August 18, 2012, 02:05 AM

certain spring
Posts: 762

I guess all these agents are very new. There seems only to be one trial for the one favoured by your mother's oncologist:
http://www.clinicaltrials.gov/ct2/show/NCT01588028
I wonder if you might think of posting on the ALK thread - that is where the knowledgeable folks hang out and you're more likely to get a response from someone with an interest in these or similar trials:
http://cancergrace.org/topic/alk-or-ros1-nsclc-patient-group
I expect you have seen Dr West's post about the mechanisms of crizotinib resistance:
http://cancergrace.org/lung/2012/01/13/mechanisms-of-criz-resistance/
Plus another thread that might be of interest:
http://cancergrace.org/lung/topic/alk-translocation-targeted-therapies-…
Very best to your mum. Might you do a forum signature?

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